What is Epidermolysis Bullosa?
The characteristic features of EB are blisters filled with blood or other clear fluid. These
blisters may be caused by pressure, friction or stress.
EB may vary from a relatively mild disorder to a severely mutilating and sometimes fatal disease.
In the simple types of the disorder, blisters heal without permanently damaging the skin.
In the more serious types of the disease the blisters heal with scaring, faintly resembling burns,
and in time the appearance of all the skin becomes changed. These scars may occur in the inner
organs, like the oesophagus. The scarring may cause severe deformity in parts of the body, most
notably the hands. Here it eventually leads to fusion of the fingers and thumb, rendering the
hand useless.
EB is not contagious and does not impair mental activities.
What does EB mean to the individual concerned?
For a small group in our population the diagnosis of having EB goes with a life long heavy
handicap. Problems arise during daily life activities like walking, touching, eating, or
body hygiene.
Difficulties at nutrition and hygiene accompany childhood.
Normal activity and the urge to play games are limited for a child suffering of EB.
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